Tag Archives: migraine

I am on day 6 of a migraine. I’ve never had one go on this long before and the novelty wore off on about day number 3. If it doesn’t jog itself along soon we’re going to have a serious falling out.

Migraines and headaches are two totally separate entities. If you have to ask if you have a migraine, you probably don’t have a migraine. Headaches are bothersome, but they don’t make want to chop your noggin off with a rusty axe.

My migraines usually have a distinct prodrome phase. This is like the warning you get from Microsoft when there is about to be a major Windows update – it will begin outside of working hours (often just as I am about to go to sleep), will cause significant pain and will bugger up everything. You know it’s coming but there is nothing you can do to stop it. During the prodrome, I am like the hungry caterpillar munching everything in sight. I have been known to eat Starburst for breakfast and to chomp my way through a family-sized bag of peanut M&Ms at midnight. Unlike the hungry caterpillar, however, I will not get fat, slip into a cocoon and emerge a beautiful butterfly – no, I will just get fatter and fatter until I explode. If, one day, you hear a very loud bang feel free to come and scrape my body parts off the ceiling.

After 48 hours of acting like I have Prader-Willi syndrome, the pain starts. It is, on the whole, one-sided though there are occasions where it affects my entire head. It is throbbing in nature and even the slightest movement is like an ice pick in my skull, the solution to which is not to move. Not even to breathe.

With the pain comes the nausea. My stomach resembles a washing machine as it swishes and spins and occasionally voids its contents out of my mouth. Peanut M&Ms, I’ve discovered, are nowhere near as nice on the way up as they were on the way down.

Half my face is crimson red and the other deathly white. One eye is semi-shut, one eardrum is burning, my neck is made of crushed glass and the back of my head is completely numb. I am not a happy bunny.

Sleep is impossible. I lie there in the dark, my skull gnawed by rats and pain pulsating to the beat of my heart. At 3am I raid the kitchen for ice cubes, which do help despite the fact they freezer burn my skin off. My pillow is now also soggy.

Dawn arrives and with it enemy number one – light. It pierces my eyeballs like a laser and burns holes in my brain. Ouch. No, really. OUCH! Then the postie arrives, each step towards the letterbox mirrored by violent yaps from my dog, which sends lightening bolts of searing pain to my nut. I’m consumed by the desire to rip out his vocal chords with my bare hands.

In desperation I swallow a teaspoon of infant ibuprofen (age 3 months+), then hold my breath for an hour waiting for the anaphylaxis to begin. So far it never has, but that’s no guarantee for the future. It helps a bit. Not a lot, but a bit.

Eventually, sometimes after 1 day, sometimes after 6, the rats stop gnawing, my guts stop churning and I gingerly lift my head off the damp pillow, blinking at the daylight like I’ve spent a month in a pitch-black cave. My brain swims, my spasmed jaw aches and my neck and shoulders crunch like gravel. I’d see an osteopath if I weren’t allergic to manipulation. And acupuncture. And massage. And painkillers. And triptans. And just about any goddamn thing which might help.

Now begins the postdrome phase. It’s like a hangover, just without the fun of being drunk. I have the cognitive ability of a 2 year old, the energy of a 102 year old, and I’m so grumpy even the dog is wary. I doubt whether Tyson Fury after a knockout has a brain which feels this bruised and my post-on-fire eyeballs are full of grit. But finally I sleep, and when I wake all is well. Until the next time …..

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A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation. I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you. There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉

VISUAL SNOW

The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise. Luckily for me mine is only mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits. Mine is white snow but for other people it’s multi-coloured. Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):

BLUE FIELD ENTOPIC PHENOMENON

I noticed this for the first time earlier on this year and it totally freaked me out. It was a lovely, sunny spring day and my friend and I were sitting down by the river. I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms! My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine. I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina. I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:

FLOATERS

I’ve talked about my floaters before here on my blog. Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark. Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision. Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:

The scary thing is that there is currently zero research being done on floaters. None. Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦

MIGRAINE AURA

I started with aura migraines in my late teens and have been having them ever since. The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight. They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine. I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out. When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good. Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)

Difficulty seeing in low light

Halos round lights at night – particularly bad when driving

And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters. It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.

I started charting my migraines in tandem with my menstrual cycle in 2009 in the hopes that I could find some kind of pattern. Below is my first chart and it turns out that in 2009 I had an almost permanent bad head and migraines which often lasted 3 days straight 😦 The numbers along the top of the chart are the days of my menstrual cycle. Down the left are the months of the year. The grey blocks on the left are my actual period (as you can see it didn’t last long!), and the grey area on the right just marks how long my cycle was that month, eg. in Dec08 (the first entry) my cycle was 27 days long and in Jan09 my cycle was 29 days long. It’s clear from the chart that I hadn’t started peri-menopause yet and my cycles were regular as clockwork at between 27 and 29 days.

M=migraine h=headache

In 2013 I started my low histamine diet but I was so ill at the time I wasn’t able to keep my charting up, so the next set of data I have is from 2015. I think you can see that after 18 months of eating low histamine foods my migraines have improved substantially and my headaches have disappeared completely, yayyyy 😀 However, you can also see that I am now in peri-menopause. My periods often last a day longer while my cycles are getting shorter sometimes down to 21 days.

I also think it’s clear from the chart that my migraines are now linked to my menstrual cycle with migraines worse during bleeding, mid cycle and again just before the cycle ends and this pattern has continued.

Below is 2017s chart and as you can see there’s about an 80% chance of me having a migraine while I’m having my period which, as the peri-menopause progresses, are getting longer still having gone from two days in 2009 to sometimes five days in 2017. There are then zero migraines in the week following my period – happy days :-). Mid cycle, however, following ovulation which for me is usually around day 12 there is about a 65% chance of a migraine often lasting for more than one day. Then usually another quiet spell until two days before my period begins when there’s around a 75% chance of a migraine.

So what’s going on with our hormones and why are they giving me a sodding headache?! There are three main menstrual hormones: oestrogen (or estrogen if you’re American), progesterone and testosterone. Testosterone is often left out of the hormone equation but I know that for me it plays a big role and is probably responsible for my rampant sex drive at certain times of the month!

In the first few days of the cycle, while we’re actually bleeding, all hormones are very low and my chances of a migraine are high.

By the beginning of the second week (ie day 8) both oestrogen and testosterone are rising, while progesterone stays low. I don’t tend to have any migraines at this time.

By the end of the second week though (days 12-14) progesterone has started to rise and there is a big spike in oestrogen and a smaller spike in testosterone. Then at ovulation testosterone declines and oestrogen crashes, again setting off my migraines which carry on until around day 17/18 when oestrogen once again starts to rise.

All hormones are at their highest in week three of the menstrual cycle (ie days 14-21) and again I see a lull in my migraines.

Then at the end of week four all hormones nosedive and the decline once again sets my migraines off.

It’s easy to blame oestrogen for everything as it’s the hormone which goes up and down the most spectacularly, but it may not be as simple as that. When I look at my migraine pattern it fits the ups and down of testosterone every bit as much as it fits the ups and downs of oestrogen, and of course progesterone comes into the equation just before ovulation when my migraines appear and carries on until the end of the cycle just like the other two hormones. So in fairness it could be any three of the hormones in isolation, or the balance between them which sets my migraines off.

Or it could be something else entirely more complex. For example, oestrogen drives histamine and histamine has been linked to migraine disorder. Or it could be progesterone, which adversely affects collagen and may cause more instability in the neck and spine and thereby cause migraine. Like most things period-related no-one has a clue what’s really going on.

I read differing stores about Menopause and the effect no longer having periods has on migraine disorder, with some women saying it helped enormously and they now hardly ever have migraines and others saying it’s made no difference to their migraine frequency. As my migraines are so clearly linked to my menstrual cycle there’s one thing for sure – Menopause is going to have some effect, it’s just whether that’s going to be for the better or the worse. I guess only time will tell.

This is another peri-menopause related post, so feel free to skip it if you’re male, a younger female who doesn’t want to know what the future holds or a jammy older woman who has put menopause hell behind them 😉

I’ve been having a new symptom and it has not been pleasant. Several months ago, while teaching software to a group of people at my Camera Club, I suddenly felt like I was having a stroke. I know that sounds dramatic but trust me when I say it was dramatic. Out of the blue I felt my brain lurch inside my skull and all thoughts ceased. I couldn’t think, I couldn’t speak and I felt like I was going to pass out. I have no idea how I kept functioning for the remaining minutes until our coffee break, but I somehow coped then made a hasty retreat to the loo, where I sat on the throne with my head in my hands wondering what the hell was happening. After five minutes or so I started to shake and feel ridiculously hungry and I realized my blood sugar had tanked, so went and got myself a brew and ate some biscuits. Later I managed to drive home, albeit feeling crazily spaced out, but for days afterwards I felt really dizzy and disoriented.

Most people would have rung the Doctor but I just figured if it was a stroke I seemed to be recovering and if it wasn’t a stroke they wouldn’t have the foggiest clue what it was, so I couldn’t much see the point. My almost phobic fear of the medical profession and being labelled bonkers outrode my fear of what was happening to me.

That was back in September and this week it happened again, this time while I was sitting quietly in bed watching the telly. I genuinely felt like I’d been coshed over the head with a blunt instrument, saw stars and then felt ridiculously woozy for the rest of the night. For the next four days I kept having weird head rushes, a feeling like my brain was lurching in my skull and felt constantly woozy like I had some kind of concussion. I also had a low level thumping headache and my brain actually felt sore, a bit like it was bruised. On day number five, ie this morning, I had some mild head rushes when I first got up but then seemed to brighten up and didn’t start feeling woozy again until around 7pm. It’s now 8pm and every time I move my eyeballs I feel dizzy – writing this post is making me proper nauseous.

It’s been quite scary if I’m honest, but I did realize that this week I should be ovulating so I’m assuming it’s some kind of hormonal problem. I Googled “menopause weird head symptoms” and came across dozens of pages, but they were mostly accounts of dizziness rather than the violent brain lurching I’ve experienced, or women who were having anxiety and/or panic attacks which is something I’ve thankfully never suffered from. From the women’s accounts they were having symptoms which only lasted an hour or two at most, or symptoms which came and went, not lasting days on end like mine have been this week. I have had quite bad dizzy spells on and off for a couple of years now but this feels very different – more woozy and with disequilibrium rather than vertigo, plus the head rushes and brutal, sudden feeling like I’ve just been battered on the nonce.

To be honest I’ve no freakin’ clue what’s going on and currently have no intention of finding out. I’m so sick of Doctors looking at me like I’m nuts, or giving me all sorts of tests which always come back normal then looking at me like I’m nuts, that I’d rather suffer the weird head shit than put myself through the trauma that is medical care. The symptoms have two choices – they will either go or they won’t and if they don’t and they become unbearable I’ll have to have a rethink. I’ll probably be offered drugs I can’t take in any event, particularly if they’re migraine related, so I can never much see the point in going to the Doctors. I’m just hoping it’s my hormones and will settle down soon – keep your fingers crossed for me!

I’ve had a request for an update on my peri-menopause. Apologies to my younger, and male, readers to whom this doesn’t apply – be thankful cos it sucks.

I first noticed my periods had started to change back in 2012 – I’ve charted my cycles since then which you can see in this post. I also wrote about my journey to date last July which you can read here.

Nothing much seems to have changed in the last 6 months as far as I can tell. My periods continue to be regular though a bit erratic. My last five cycles have been 23 days, 28 days, 26 days, 21 days and this month 25 days. Bleeding is heavier than it used to be, particularly on the first day, and more clotty. I can find myself changing tampons every 1-2 hours because they’re soaked. I’ve actually fainted a few times in the past 6 months while having my period. I now know this is probably due to very low iron levels.

I’ve never had long periods, usually 2-3 days, and this hasn’t changed. However I’m now spotting, sometimes quite heavily, for up to 4 days after my period has finished which is new. Also new this month is mid-cycle spotting. I’m currently on day 9 of my cycle and have had a brown/bloody discharge for the past 24 hours. I’ve also had stomach cramps and severe nausea, however I think that may be related to the iron supplement I’m taking so I’m discontinuing that for the next few days to see if it settles then will try it again once ovulation is over so that I know which symptom belongs to what.

My brain fog is currently dreadful. I feel like I’ve been koshed over the head and all I want to do is sleep. However, this could be down to my anaemia – when you have different health issues going on it’s so hard to know what’s causing what.

My sleep has definitely been worse the past few months. I get off to sleep OK but wake several times during the night and I’m having some powerful dreams/nightmares.

My legs are on fire by 9pm every single night. This has been going on for some years now and gives me wicked restless legs which drive me insane. My top half is freezing but my feet are dangling outside the covers even though it’s winter and often sub zero at night!

I have some pretty bad night sweats, where I wake covered in a film of what feels like oil from head to toe, but these are currently confined to when I’m actually having my period or the few days leading up to it.

I have vaginal dryness, though so far only around ovulation and for a week or so after menstruation. I’ve always taken my vaginal lubrication for granted and now realize how important it is. When it’s absent your knickers rub against your bits and actually make them sore 😦 I’ve had to buy some K-Y jelly to combat this, which stings when I first put it on but does thankfully settle down. My skin is much more dry in general. I’ve never really used moisturizer on my face but now feel the need to, simply because it feels itchy and tight if I don’t.

My breasts seem to be very tender most of the time. I only have about 5 days after the end of my period where they’re OK then the aching and tenderness start again. New in the past few months has been stinging, shooting nerve pain which goes from under my armpits to my nipple. Ouch. No, really. OUCH! I’ve had this checked out via a mammogram and thankfully all is fine and it’s just been put down to my hormones.

I always forget to mention sex drive when talking about my peri-menopause because I’m not in a relationship so it’s basically irrelevant to me. However, for those who are interested my libido seems to be largely unchanged though does fluctuate massively with my menstrual cycle. I am intensely horney around ovulation and again around my period week, but not so much the rest of the time. If I were in a relationship, however, I’d be far too knackered and nauseous to want rumpy pumpy.

For the entire time of peri-menopause I’ve had palpitations. I’m sitting watching the telly and all of a suddenly I skip a heart beat then get a huge thump of a heart beat after it, or I get a run of thumpy beats. They’re really unpleasant and as the adrenalin surges round my body it can make me feel quite anxious. I’ve had them checked out with a 24 holter monitor and the doctor said they are nothing to worry about – it sure doesn’t feel benign though when you’re having them.

My memory is truly awful and I struggle for words constantly (I sat for quite some time trying to think of the word “benign” in the previous paragraph!). It’s embarrassing and frustrating to have such poor cognition and I know this probably won’t improve now and I’ll just have to live with it.

I’m sorry to have to tell other EDSers this, but since I started peri-menopause 5 years ago my joints and ligaments have gone to hell in a handcart. I’d never subluxed a joint until my hormones started to wane and my body seems to have stiffened up literally overnight. I feel like my body has aged 20 years in my mid forties.

On the plus side I’ve had much fewer migraines since I started peri-menopause. I used to have them up to 3 times a week, and they’re now down to around 2 a month and these are confined to ovulation and menstruation 🙂

My energy levels are rubbish, but again I think that’s down to my anaemia rather than the peri-menopause per se (although it’s probably the menopause which is causing the anaemia!). No matter how exhausted I feel, though, I do try and get out for a short walk every single day as I feel continuing to exercise is really important for bone health, muscle strength, mental health and Vitamin D levels.

My mood is good on the whole. I do have odd days where I feel intense and inexplicable rage, and days where I could burst into tears at the slightest thing, but nothing which isn’t manageable. I do also have days where I feel intensely anxious for no good reason, but again this is to be expected with wildly surging hormones and isn’t anything I can’t handle.

I seem to be hungry all the time and it’s really hard not to cave in to the munchies. Many women gain weight around the menopause then can’t shift it, so I’m really conscious of how much I’m eating and how little I’m exercising as I’m exhausted much of the time and in so much pain. I’ve gained 4lbs in the past 6 months, which doesn’t sound much but I’m only tiny to start with and my jeans are definitely uncomfortable! The bloating from my endo and adeno isn’t helping the situation one iota.

The biggest plus for me so far is that I’ve not had any hot flushes. Over the 5 years of peri I’ve only had two, though I’m sure I won’t get off scott free!

In a nutshell, so far the worst symptoms for me have been:

Nausea

Hot legs and feet at night

Marked worsening of my Ehlers-Danlos syndrome

But bonuses have included:

Much fewer migraines

So far no hot flushes

The thing which has disappointed me the most is how long the whole process is taking. My Doctor said once my periods started to change it would all be over with in 2 years – wishful thinking that was! I’m 5 years into peri-menopause and the whole thing seems to be taking forever. You read about it lasting up to 10 years and secretly think to yourself “nah, it won’t take that long for me” but I currently feel like the whole thing is interminable. I just want it over and done with so that my body can re-adjust and I can learn to live without my hormones.

This post isn’t meant to be whiney because I personally feel menopause is a natural event and just something we women have to get through. That being said, I write about it because it‘s still challenging and I personally trawl the message boards looking for other women having the same symptoms as me so that I know what I’m experiencing is ‘normal’. Well, as normal as you can get when you live with 4 other diseases (I’m now counting my Endometriosis and Adenomyosis as a disease in its own right, because I suffer from the symptoms every day of my life).

My menstrual cycle starting changing in 2012. I’ve always been regular as clockwork, sometimes down to the hour, with a 27/28 day cycle but in 2012 this shifted slightly and for the first time in my life I experienced 30 day cycles, and 26 day cycles, and everything in between. As the years have ticked by my cycles have been consistently longer, or consistently shorter and this month I’ve had my shortest one to date at 19 days. It’s come as a bit of a shock because my vision of peri-menopause was that my cycles would get longer and longer and then just peter out but the reality is that my cycles have been all over the place, and on the whole shorter than usual not longer. This apparently happens in the first two phases of perimenopause and only in the latter two stages does the cycle lengthen.

Other than my cycles being a bit nuts I’ve had virtually no other symptoms. I can count my hot flushes on one hand, though I’m sure these will increase the further along the line I get, and I’ve noticed no worsening of my pre-existing insomnia. In fact I sometimes think my deep sleep has improved.

I do get night sweats. Well they’re not sweats as such, I just feel like my legs are on fire. By 9pm every night it’s like someone’s flicked a switch and my legs are boiling hot and jumpy. However, I’ve had restless legs my whole life so this isn’t new to me and the hot leg thing has been happening for about a decade now so whether it’s caused by my pre-existing illnesses or part of my hormonal changes I’ll never know.

I’ve luckily never suffered from PMT. I can have a short fuse, or be a bit weepy, around my period but nothing that has ever interfered with my life and at the moment this hasn’t altered. I have had two or three massive meltdowns in the past 3 years which are totally out of character for me, but these could be as a result of my own stressful health situation and having to adjust to caring for my parents every bit as much as they could be down to the perimenopause. There have definitely been times, though, where I’ve been snappier than usual and felt boiling rage for no particular reason which is definitely hormone related.

Bleeding-wise my periods are heavier. They don’t last any longer, but the flow has increased and is much more clotty than it used to be. I usually have a break from bleeding after day 3, only for it to return on days 5 or 6 which isn’t usual for me though from what I read is normal for perimenopause.

My menstrual migraines have definitely increased this year which is a bummer. I can only pray I’m not in for too rocky a road in that direction over the coming years as my hormones surge, crash and finally burn.

Many women complain of increased joint pain and muscle weakness during this time of their lives and I’ve had my fair share of both. I feel like I’ve turned into a pensioner overnight and do the whole “oomf” thing every time I get out of the chair 😉 I can still crouch down to get something out of a drawer but genuinely struggle to get back up again. Whether this is an EDS thing or a hormone thing, or a combination of both, is impossible to know. I’m 48 going on 78!

This month my short period has hit me hard in the exhaustion stakes. I took Bertie out Saturday morning, came back at 11am and had to go back to bed where I slept until 1pm. This was repeated on Sunday, and both times after I’d woken back up I felt like I’d been hit by a truck and was useless for the rest of the day. This morning I’ve woken feeling just as weak and knackered but I’ve got too much on to be able to snooze the day away. In my 22 years of having M.E. I’ve never been able to sleep during the day, even when I’ve only had 1 hours sleep at night, so this daylight kipping is totally new to me and makes me feel like crap. As I’m typing this I feel like someone’s slipped me a couple of Valium and my brain feels so foggy I simply want to lay my head down and sink into oblivion!

Perimenopause is supposed to last between 1 and 10 years, though most doctors wrongly tell you it will last 2 years and you’ll be done (I wish!). This is year 4 for me and it feels like very little is changing – my periods are continuing on their up down up down course and not really moving on. So far the experience isn’t at all like I expected and is better than the horror stories I’ve read online. Or it could be that I simply cope with the changes in my body better than healthy women as I’m used to feeling rubbish all the time anyway. Maybe I’m in for a rude awakening in the next couple of years as the whole thing goes belly up but I hope, just for once, I’ll catch a break – I think I deserve that at least!

This week has been emotionally and physically hard going. I’ve had yet another awful menstrual period and have been plagued with migraines 😦 I had a 3 day-er with vomiting leading up to my period, I had a 1 day-er during my period, and another 2 day-er (which is still lingering) as my period is tailing off. So really the last 10 days have been a right off and I’ve been hormonal, emotional and totally pissed off.

I knew the migraines were coming because I get ravenously hungry, while at the same time feeling sick to the very pit of my stomach. I can’t face normal food though and always get strange cravings, usually for ice cream (which I never touch any other time), fizzy pop (which again I never drink), crisps and other nutritionally-deficient shite. I couldn’t eat a piece of nice fruit, or a healthy sani, if you paid me.

In amongst it all I’ve been trying to buy my Mum’s birthday presents – she’ll be 76 next week. A few days ago the cleaner accidentally broke a table lamp Mum has in her lounge, so she asked if a new lamp could be one of her prezzies. I knew exactly the kind she wanted but tbh they’re rather old fashioned and the only one I could get was “vintage” (ha!) off Ebay. I spent two head banging days looking for just the right one, persuaded the seller to end the auction early, the lamp arrived……..and it had been badly damaged in transit and was unusable. FFS! So despite the rats gnawing at the inside of my skull I had to drive into town on Thursday to go lamp shopping as I’m running out of time. I’ve settled on a Tiffany style and had to tell my Mum she wasn’t getting the figurine-style lamp she ideally wanted as no-one makes them anymore, but hopefully she’ll like the alternative – I just hope the damned thing arrives this week as it had to be ordered.

Thankfully I woke on Weds banging-head free and was able to take my Dad through to the city for his CT scan. However, the day didn’t go to plan. We got there to find the scanning unit packed to the rafters and boiling hot (it’s in a part of the hospital with no windows or air con) – apparently one of the machines had broken down that morning so they were running 2 hours behind. Yay. My Dad is like a caged lion when he’s nervous and can’t sit still. At one stage he decided to “go for a wander” to the end of the corridor in search of a magazine and for the first time ever I was anxious he’d get lost and not come back – it’s weird to have to keep an eye on your parent like they’re a child. When our turn eventually came the scan only took 4 minutes from start to finish which was great, but although the Memory Clinic have the results they can’t discuss them with us until they’ve discussed them with my Dad’s GP, who is currently on holiday for a fortnight.

Today, if the dizziness I’ve woken with settles, I’m driving the 45 minutes to see my best mate. I was due to go yesterday but spent the day in bed feeling like my head was imploding instead. My friend has both ME, POTS and is Coeliac. As she lives near the city there are luckily places which do gluten-free food and she and her partner ate at one of their regular haunts last week, believing the meal she chose was coeliac friendly. However, she then spent the next few days exploding from both ends. Turns out the regular chef hadn’t been in that night and the under-chef didn’t realize that the batter used for the onion rings was made with wheat flour. So my friend had been glutened. This is really serious for Coeliacs, as gluten can give them stomach cancer not to mention making them horrendously ill. Just eating one tiny onion ring will show gluten in her system for several months.

Restaurants these days are required by law to state any allergens in their food, but you have to wonder how informed the staff really are. Gluten is a hidden ingredient in many products you wouldn’t ever think of, like Soy Sauce, Mayonnaise and even some packets of pre-grated Cheddar cheese. A take-away owner was jailed for 2 years this week after claiming his food was suitable for someone with a peanut allergy, only to kill a punter. It was found he used almond flour, not realizing this would be unsuitable for someone with a nut allergy!

To end on a lighter note, and let’s face it my life needs light this week, I’ve been playing about with some photos I did of my friend’s kids using shadow puppets of my own hand I made on the wall. The girls loved them 🙂

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Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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